Bone Marrow Biopsies


Walking from the parking garage into the hospital.  Three very anxious kids and one anxious mom!

 Well, this was the week we traveled to Seattle for bone marrow biopsies.  It has been a long week and I feel like we spent more time in the car than we did out of the car.  Things went okay, each of the kids had to give up about three times more marrow and bone samples this time than they have in times before so recovery has been slightly more difficult.  We met with a different Oncologist before the procedures because our other Oncologist whom we met in August was at the Fred Hutchinson Cancer hospital doing her research work.  We really liked Dr. Pollard as well, she is young and had a good sense of humor.  The kids were anxious and all that anxiety came out in teasing each other and cracking silly jokes.  We were able to spend a lot of time talking about what the possible outcomes would be. 

While in the consults with the doctor beforehand, she had said that only Sam would be tested for Mitochondrial disease stating that Dr. S had felt his marrow was responding in ways associated with Mito disease.  I have always felt that Shelbie more closely matched the mito disease so were able to talk that through.  In the end, both Shelbie and Sam did the mito testing.  They drew enough marrow on Spencer so if the other two come back positive, they will have all they need to test Spencer as well.  I didn't get a chance to take many pictures of our day there, they had 22 biopsies scheduled so we were literally being pushed through the procedures to make room for the next patient.  That was the only disappointing part of the trip.  With three kids, and one me, there was just no time to be a photographer.

I learned a lot about Mitochondrial disease.  I have been studying in preparation for these tests so I knew a fair amount but this visit was helpful.  Mitochondrial disease is very ellusive.  It can show up in the marrow, the peripheral blood or the muscles.  So, just because one area tested comes back negative, does not mean that the disease does not exist.  The disease can cause organ failure, memory loss, bone marrow failure and a host of other problems.  I am crossing my fingers that they don't have this disease in addition to SDS.  It would seriously compromise their health even more. 

Results won't be in for about 2 weeks on the marrow and closer to 2 months on the mitochondrial.  It will be the waiting that kills us!  Now that we are home, I have about a million more questions.  It's been hard the past few weeks because of the critics I have who think I am less than logical and question the things I do to take care of my kids.  While we visited with the Doctor, she commented that all the studying and knowledge I had aquired said it was very beneficial to the care of my children.  "You are so lucky to have a mom who knows so much!"  I have to say that made me feel really good and finally felt a little validation.

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